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Background/Aims In April 2020 the British Society for Rheumatology (BSR) issued a risk stratification guide to identify patients at the highest risk of COVID-19 requiring shielding. This guidance was based on patients' age, comorbidities, and immunosuppressive therapies - including biologics that are not captured in primary care records. This meant rheumatologists needed to manually review outpatient letters to score patients' risk. The process required considerable clinician time, with shielding decisions not always transparently communicated. Our aim was to develop an automated shielding algorithm by text-mining outpatient letter diagnoses and medications, reducing the need for future manual review. Methods Rheumatology outpatient letters from Salford Royal Hospital, a large UK tertiary hospital, were retrieved between 2013-2020. The two most recent letters for each patient were extracted, created before 01.04.2020 when BSR guidance was published. Free-text diagnoses were processed using Intelligent Medical Objects software1 (Concept Tagger), which utilised interface terminology for each condition mapped to a SNOMED-CT code. We developed the Medication Concept Recognition tool (MedCore Named Entity Recognition) to retrieve medications type, dose, duration and status (active/past) at the time of the letter. The medication status was established based on the heading where they appeared (e.g. past medications, current medications), but incorporated additional information such as medication stop dates. The age, diagnosis and medication variables were then combined to output the BSR shielding score. The algorithm's performance was calculated using clinical review as the gold standard. Results To allow for the comparison with manual decisions, we focused on all 895 patients who were reviewed clinically. 64 patients (7.1%) had not consented for their data to be used for research as part of the national opt-out scheme. After removing duplicates, 803 patients were used to run the algorithm. 11,558 free-text diagnoses were extracted and mapped to SNOMED CT, with 15,003 free-text medications (that included past, present and any planned treatment). The automated shielding algorithm demonstrated a sensitivity of 80.3% (95% CI: 74.7, 85.2%) and specificity of 92.2% (95% CI: 89.7, 94.2%). Positive likelihood ratio was 10.3 (95% CI: 7.7, 13.7), negative likelihood ratio was 0.21 (95% CI: 0.16, 0.28), F1 score was 0.81. False positive rate was 7.9%, whilst false negative rate was 19.7%. Further evaluation of false positives/negatives revealed clinician interpretation of BSR guidance and misclassification of medications status were important contributing factors. Conclusion An automated algorithm for risk stratification has several advantages including reducing clinician time for manual review to allow more time for direct care, improving efficiency and transparently communicating decisions based on individual risk. With further development, it has the potential to be adapted for future public health initiatives that requires prompt automated review of hospital outpatient letters.
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Background/Aims Rheumatic and musculoskeletal diseases (RMDs) are some of the most common indications for prescribed opioids. It is unclear how opioid prescribing has changed in the UK for RMDs, especially during the COVID-19 pandemic with limited healthcare access and cancelled elective-surgical interventions, which could impact prescribing in either direction. We aimed to investigate trends in opioid prescribing in RMDs and assess the impact of the pandemic in the UK. Methods Adult patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA), axial spondyloarthritis (AxSpA), systemic lupus erythematosus (SLE), osteoarthritis (OA) and fibromyalgia with opioid prescriptions between 01/Jan/2006-31/Aug/2021 without prior cancer in the UK Clinical Practice Research Datalink (CPRD) were included. We calculated ageand gender-standardised yearly rates of people with opioid prescriptions between 2006-2021, and identified change points in trends by checking whether the rate of change of standardised rates crossed zero. For people with opioid prescriptions, monthly measures of mean morphine milligram equivalents (MME)/day were calculated between 2006-2021. To assess the impact of the pandemic, we fitted regression models to the monthly number of people with opioid prescriptions between Jan/2015-Aug/2021. The time coefficient reflects the trend pre-pandemic and the interaction term coefficient represents the change in the trend during the pandemic. Results We included 1,313,519 patients: 36,932 with RA, 12,649 with PsA, 6,811 with AxSpA, 6,423 with SLE, 1,255,999 with OA, and 66,944 with fibromyalgia. People with opioid prescriptions increased from 2006 to 2018 for OA, to 2019 for RA, AxSpA and SLE, to 2020 for PsA, and to 2021 for fibromyalgia, and all plateaued/decreased afterwards. OA patients on opioids increased from 466.8/10,000 persons in 2006 to a peak of 703.0 in 2018, followed by a decline to 575.3 in 2021. From 2006 to 2021, there was a 4.5-fold increase in fibromyalgia opioid users (17.7 vs.78.5/10,000 persons). In this period, MME/day increased for all RMDs, with the highest for fibromyalgia (>=35). During COVID-19 lockdowns, RA, PsA and fibromyalgia showed significant changes in the trend of people with opioid prescriptions. With a decreasing trend for RA (-0.001,95%CI=-0.002,-0.001) and a decreasing-to-flat curve for PsA (0.0010,95%CI=0.0006,0.0015) prepandemic until Feb/2020, the trends changed by -0.005 (95%CI=-0.008,-0.002) for RA and -0.003 (95%CI=-0.006,-0.0003) for PsA, leading to steeper decreasing trends during the pandemic (Mar/2020-Aug/2021). Fibromyalgia, conversely, had an increasing trend (0.009,95%CI=0.008,0.009) pre-pandemic, and this trend started decreasing by -0.009 (95%CI=-0.011,-0.006) during the pandemic. Conclusion The plateauing/decreasing trend of people with opioid prescriptions in RMDs after 2018 may reflect the efforts to tackle the rising opioid prescribing in UK primary care. Of all RMDs, fibromyalgia patients had the highest MME/day throughout the study period. COVID-19 lockdowns contribute to fewer people on opioids for most RMDs, reassuring there was no sudden increase in opioid prescribing during the pandemic.
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Background/Aims Up to one-third of people with rheumatological conditions were required to 'shield' from COVID-19. This co-produced, qualitative research aimed to understand experiences of the shielding process and the impact of shielding upon people's lives. Methods Adults who shielded due to rheumatological disease participated in audio-recorded interviews and focus groups (FGs). Framework analysis combined inductive and deductive approaches. Creative materials were collected. Two patient contributors proposed the study, are co-investigators, and conducted the research alongside a clinical academic and four-member patient advisory group. COREQ and GRIPP2 guidelines were followed. Full ethical approval was granted by the University of Manchester Research Ethics Committee (2021- 11544-20348). Results Data were generated from 28 interview and 12 FG participants between October 2021-January 2022. 15 people contributed creative materials. Characteristics included 44/48 (85%) female, ages 18-75 years, non-white 10/48 (21%), all UK regions (Table 1). Corbin & Strauss's theory, 'Three lines of work: Managing chronic illness', frames the findings. Shielding increased and shifted the burden of 'illness work' onto patients, e.g., in gaining access to vaccines and navigating risks and uncertainties due to COVID-19. 'Life work' was increased as participants struggled to access food and medicines. Participants' self-identity was re-appraised in the context of their illness. Many feared for their lives because of their diagnosis for the first time, increasing 'biographical work'. Participants' perceived value to society changed over time: feeling equal to the general population at the first UK national lockdown;abandoned by society due to 'freedom day' and formal shielding's end. 'Emotional work' was added to 'Three lines of work'. Shielding notification induced fear, stress, devastation, shock and disbelief, balanced by a feeling of being protected. Emotions experienced include anxiety, guilt, anger and frustration. Mental health problems were experienced, often for the first time. Many continued to shield beyond formal shielding's end. Conclusion This co-produced, qualitative research highlights experiences and impact of shielding including increased illness, life, biographical and emotional work. Clearer, personalised information would help shielders to understand their risk and vaccine response, informing re-integration into society.
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Background/Aims Patients with rheumatoid arthritis (RA) need support to understand and manage their condition. The COVID-19 pandemic rapidly transformed outpatient clinical consultations from face-to-face towards remote models. This increased the emphasis placed upon self-assessment of joints and disease activity, strengthening the need for patient education materials. We planned to develop a video to support patient research participants to monitor disease activity remotely using the REMORA app. We altered the video's scope and made it open access to meet the need created by changes in service delivery models. Methods A video demonstrating self-examination of tender and swollen joints in RA was co-produced with patients and the multi-disciplinary team. A nurse consultant introduces key concepts, (how to identify and examine tender and swollen joints, which joints to include, etc), coaches a patient through self-examination, and answers key questions. Materials co-produced to support implementation into practice include a joint count manikin and table, an advertising poster, and blogs. Collaboration with international research colleagues has led to the production of a version dubbed in German. Subtitles are available in German and Hindi. Online feedback was sought via a survey. Ethical approval was not required as all contributors acted as equal members of the research team. Results The 15-minute video, supporting materials and survey were uploaded to YouTube in February 2021 [tinyurl.com/REMORAvideo]. 1,000 hits were received in week one, reaching >12,500 after eight months. 20% of viewers are UK-based, 15% from the USA, 10% from India. 26% of views used English subtitles, 0.2% German, 0.1% Hindi. 124/125 people engaging with the 'like/dislike' function on YouTube, 'liked' the video. 48 people fed-back online (26 patients, 22 clinicians). Patient ages were: 18-35(5%), 36-55(62%), 56-75(29%), 76+(5%), the majority of whom were female (19/21[91%]). Before watching, 14/ 17(82%) patients rated themselves as 'poor'-'fair' at self-examination: after watching, the same number rated themselves as 'good'- 'excellent'. 19/21(90%) and 17/21(81%) patients respectively either somewhat or strongly agreed with the statements 'I now feel confident to self-examine for' 'tender' or 'swollen' joints. 19/21(90%) of patients and 13/17(77%) clinicians either somewhat or strongly agreed with the statement that 'the video fulfilled my expectations'. 18/21(86%) patients and 12/17(71%) clinicians would recommend the video. To date, several national organisations have engaged with the video. It supports the BSR ePROMS platform and national audit. The National Rheumatoid Arthritis Society plans to incorporate it into the 'Know your DAS app', and it will contribute to an NHSX playbook of digital best practice. Conclusion This co-produced training video for people with RA, originally intended to support a remote monitoring app, has been well-received, with much wider-reaching international impact than anticipated. This demonstrates the need for materials collaboratively designed with patients to support patient self-management of long-term conditions, in the digital era.
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Background/Aims Current British Society for Rheumatology guidance suggests 3- monthly blood monitoring for patients prescribed methotrexate whose disease, drug dosage and blood results are stable, although evidence for this recommendation is limited. Anecdotal reports suggest monitoring may have reduced during the pandemic. The study aims were, in patients with rheumatoid arthritis (RA) prescribed methotrexate, to determine: 1) interval length between blood tests during the pandemic, and 2) whether prolonged intervals were associated with abnormal blood test results. Methods Data came from the Greater Manchester Care Record, a database containing electronic health records from both primary and secondary care for people across Greater Manchester. Inclusion criteria were: a diagnosis of RA;regular blood monitoring (<=91 days between blood tests) and regular methotrexate prescriptions in the year prior to the pandemic (01/03/2019-01/03/2020). Blood test intervals during the pandemic were determined, a prolonged interval was defined as>91 days. Cytopenia and transaminitis events were identified between March-December 2020 and March-December 2019 (as a comparator). Proportions of events are presented for each time-period and stratified by whether the interval was prolonged. Results 1011 patients met the inclusion criteria, with a median of 5 blood tests (interquartile range (IQR): 3-7) during the pandemic and a median interval of 57 days (IQR: 34-84). 612 (61%) patients had at least one prolonged interval, with 241 (23.8%) having multiple. Prolonged intervals had a median length of 112 days (IQR: 99-135). 115 (11.4%) people had a prolonged interval but no subsequent blood test before the study end date (median 120 days [IQR: 104-150]). The proportion of cytopenia and transaminitis events was low and similar across time-periods and when stratified by interval length (Table 1). Conclusion Nearly two-thirds of patients on stable methotrexate had at least one prolonged interval and 1 in 10 had a prolonged interval with no subsequent blood test. Initial analyses of test results do not indicate increased occurrence of methotrexate blood toxicity in those with prolonged blood test intervals during the pandemic. Further work is required to determine whether those with prolonged intervals represent a group at lower risk where less frequent blood tests would be appropriate.
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Background/Aims Up to one-third of people living with inflammatory arthritis or autoimmune disease may have been classified as 'clinically extremely vulnerable' (CEV) to COVID-19 and required to 'shield'. Communication regarding shielding notification and details of how to shield were unclear, causing confusion and uncertainty. Most research into the impact of shielding on people living with musculoskeletal disease has involved either quantitative or survey-based data, with little patient involvement. This project aims to capture patient 'stories' to understand and explore the experiences of people with inflammatory musculoskeletal conditions who shielded, using co-produced, qualitative methodology. Methods The Centre for Epidemiology Versus Arthritis (CfE) is committed to involving patients and the public, convening a COVID-19 Patient and Public Involvement (PPI) group early in the pandemic. Two PPI group members developed the research idea and collaborated with a clinical academic to co-produce a successful grant application to the Versus Arthritis 'New opportunities' fund. The research aims to capture experiences and opinions on the processes for determining and communicating who is identified as CEV, and the impact of shielding upon individuals' lives. We will develop recommendations to improve the process for subsequent pandemics. People who shielded due to inflammatory arthritis / auto-immune disease are invited to discuss their experiences of shielding in semi-structured interviews (n=30) or focus groups (n=12). Up to 50 participants may submit creative materials (artwork, poetry, photographs or written word), to include those unable, or unwilling, to speak about their experiences. A framework approach to thematic analysis of data generated from interviews and focus groups will be employed. Creative materials will be used to illustrate these themes. In addition to the core team, an experienced Patient Advisory Group will contribute to the analysis. Full ethical approval was awarded by the University of Manchester Research Ethics Committee. The 'core team' (two patient/public contributors and a clinical academic) are committed to 'co-production': working together in equal partnership, driven by values such as transparency, sharing power and inclusivity, which we anticipate will improve the relevance and quality of this work. Results Recruitment to interview and focus groups was exceeded within 10 days. Half the creative materials participants were recruited within a month, and recruitment remains open. The team have given invited talks at several national and regional events, discussing the research and methodological approach, demonstrating the significant interest generated by this work. Conclusion Although most funders now mandate some form of PPI in grant applications, research ideas conceived and genuinely co-produced by patient partners are rare. The CfE's commitment to PPI enabled conversations and collaboration, which built on existing relationships, and led to successful grant funding. We look forward to further highlighting and sharing both the model of our collaboration, and the qualitative research findings.
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Learning Objectives: We sought to deliver interspersed, concise teaching points on core content while providing direction for additional reading. Using pre-scheduled learning sets messaged to students each morning, we also hoped to create a more cohesive and dedicated learning experience. : The breadth and depth of Emergency Medicine (EM) can be both attractive and daunting for medical students exposed to the specialty on clinical rotations. For clerkship directors and education faculty, it can be difficult to review a representative amount of content in the short duration of a clerkship. For students, it can be challenging to know where and what to read for end-of-clerkship exams. Furthermore, social-distancing policies during the COVID-19 pandemic limited in-person instruction, potentially contributing to perceptions of decreased formal teaching. Creative use of interspersed learning sets can provide direction for and supplement the clerkship curriculum. EMED Daily was created as part of a required EM clerkship at Stanford. Each EMED Daily is a single, multiplechoice-question (MCQ) bundled with relevant medical and procedural knowledge, as well as testing strategy for core EM content. Online survey software is used to automate the delivery of the next EMED Daily each morning. Building on concepts of “pushed” delivery from eLearning and digestible teaching moments from Microlearning, the EMED Daily allows students to engage in retrieval practice and review curated material while eating breakfast, brushing their teeth, or walking to shift. Learning sets reflect core topics from the Clerkship Directors in EM (CDEM) medical student curriculum and include links to free open access medical education (FOAMEd) resources. MCQs are not graded individually, but a completion rate of 75% is required for credit towards a final grade. The EMED Daily has been well received by students. In 6 months, the average completion rate was 96%, well above the required amount. Students commented that the EMED Daily sets “were simple and good for framing,” and “a great way to review a small amount of info every day.” Additionally, as COVID policies affected the type of patients students could see, question sets were adjusted to supplement learning as needed.
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Background: COVID-19 has catalysed the transformation of healthcare services, with outpatient services increasingly dependent upon remote models of care. Healthcare professionals now have to make clinical assessments based on remote patient examinations. The number of tender and swollen joints a patient has drives decision-making in RA, making it particularly important that people with RA and HCPs have a shared understanding of these examinations. Even before remote consultations became widespread, long gaps between clinic visits create challenges in enabling HCPs to form an accurate picture of disease activity over time. The REMORA (REmote MOnitoring of Rheumatoid Arthritis) app aims to address this issue by asking people with RA to track disease activity, including counting the number of tender or swollen joints, weekly(1). Data are integrated into the electronic patient record for clinicians to access with patients during clinical consultations. As part of the supporting materials for the REMORA app, we planned to develop a video to train people with RA how to examine their own joints. This video may now help meet the need created by the recent expansion in remote consultations. Objectives: To describe the co-production, implementation and evaluation of a video to train patients how to examine their own joints. Methods: The need for the video to fill a current gap in patient education was identified by the REMORA patient and public involvement and engagement (PPIE) group. A core working group comprising the PPIE lead, a nurse consultant, rheumatology clinicians, project and communications managers was formed. A storyboard was drafted and feedback gained from the PPIE group and wider REMORA team. Images were sourced from licenced suppliers, or co-developed with the PPIE group where necessary. No ethical approval was required as the PPIE group lead was acting as an equal member of the research term. Written informed consent was gained from video participants. Filming took place between two national lockdowns during the COVID-19 pandemic, providing a challenge to ensure social distancing and requiring the use of masks. Results: A 15 minute video to train people with RA to self-examine for tender and swollen joints was developed. An introduction outlining the rationale behind self-examination is followed by a nurse consultant coaching an RA patient in individual joint self-examination. Shoulders, elbows, wrists, metacarpophalangeal joints, proximal interphalangeal joints and knees are included, all of which are counted in disease activity scores. Early feedback from stakeholders has been overwhelmingly positive. The video will be publicly available on YouTube from February 2021. A survey of patients and HCPs aims to obtain more formal feedback on the video, with a view to a further iteration, if required. Leading national organisations in rheumatology will promote the video, as it supports national programmes including the British Society for Rheumatology national early inflammatory arthritis audit and ePROMS (electronic patient report outcome measure) platform, both of which include entry of patient reported tender and swollen joint counts. Conclusion: This video was co-designed by people with RA, aiming to support self-examination of tender and swollen joint counts. Hits on YouTube and survey responses will help assess its impact. Evaluation to assess whether the video affects patients' ability to self-examine for tender and swollen joints before and after watching is planned. We hope the video will support remote consultations and help people with arthritis to better understand and self-manage their arthritis, and to have shared decision making conversations with their clinicians.
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Background/AimsThe digital healthcare revolution provides the opportunity for cliniciansand researchers to collect useful data on a frequent and remote basis.Work ability is impacted by many rheumatic diseases, including theidiopathic inflammatory myopathies (IIMs), however, methods to assess the real-time impacts are limited. This study aims to explore theimpact of IIM flares and symptoms upon employment using frequentlycollected data via a smartphone-based app.MethodsThe Myositis Physical Activity Device Study recruited a UK-basedadult IIM cohort who completed weekly employment and flarequestions via a specially designed smartphone-based app throughouta 91 day period in 2019/20. Employment-related questions wereassessed every week (see Table 1 for details). Flares were reportedvia a weekly question. Employment variables were compared betweenflare and non-flare weeks using descriptive statistics. The relationshipbetween flares and work productivity was assessed using multi-levelmixed effects logistic regression modelling, adjusted for age and sex.ResultsData on 13 (69% female) employed participants was analysed. Amedian of 5 flares were reported per patient during the three monthperiod (IQR 3, 9). Summary employment results are displayed in Table1. Participants reported greater impact of IIM upon employment, lowerproductivity and fewer hours worked during a flare week, compared toa non-flare week. There was a significant association between flaresand detrimental impact upon work productivity (odds ratio [OR] 1.07, 95% confidence interval [CI] 1.03, 1.12, p < 0.01). Flares were alsosignificantly associated with an increased number of work hoursmissed due to IIM (OR 1.04, 95% CI 1.01, 1.08, p = 0.02)ConclusionOur study has demonstrated that IIM flares are significantly associatedwith detrimental impact upon employment ability. On average, patientslost 15 hours of work a week during a flare compared to less than2 hours outside a flare. The economic and personal impact of flareshighlights the need for research in this area, with the aim of allowingearly identification and instigation of treatment and possible need forsupported work. Smartphone based remote monitoring of flares andother pertinent variables could enhance digital consultations, whichmay become more common in the post COVID-19 setting.